Does anyone else experience visual (ocular) migraines?

[Aime]

I have PV and have just had an extremely quick visit to the optician after the words on my computer screen started dropping and strange things were happening with size also. I have a headache and pressure in my head. I have had visual migraines before with flashing lights, floaters, etc but this is the first time print has been affected. In the past, my vision was like looking through water for about 5 mins and then it came back again. I have had my eyes thoroughly checked and it is just down to migraines. Does anyone else experience this? It is quite scary to begin with.

[LouisePRV Volunteer]

Hi Aime,

I was diagnosed with PRV 3 years ago - for about 5 years before this I experienced quite frightening visual disturbances, similar to looking through broken glass. No headache though.

This could last up to half an hour, and was so bad that if I was driving I had to pull over and stop. I quickly learnt that if I drank half a litre of water, it would disappear.

My doctor couldn't make a diagnosis of course, but once I had been diagnosed with PRV and my blood count was sorted I was fine.

I now experience it very rarely, and always when I'm dehydrated. ( I make sure I drink around 3 litres of water per 24 hours)

Have you mentioned this to your haematologist? I would. Meanwhile make sure that you start drinking lots, and lots and LOTS of water. Really important.

Hope that might help.

Louise

[Swede]

Hello,

Yes , I used to have a terrible headaches (cluster migraine they called it, or Horton's or suicide migraine)and visual disturbances, often and very very badly, which started about two years before I was diagnosed with E.T. I could not talk sometimes even.

After I started on the medication, soon 6 years ago, I have had one little attempt to headache, nothing else.

Yes, I would also tell the Doc. as soon as you can. It is very tiring as well , not to mention scary to experience these things.

[Jo_L]

I used to get them at least once a week before my PV was diagnosed and when my haematocrit was very high (0.65) but don't think I've had any since it was brought down to an acceptable level.

Jo

[StuEP]

Hi Aime,

Yes, I also experience auras with my migraines. I have PV and ET, and have been having them for a while. They went away a few weeks after I started on chemo but I was being treated for the migraines as a separate condition and the neurologist ordered a lumber puncture. Unfortunately the auras and migraines returned after that and haven't gone away since (I'm now having follow up tests). My auras consist of floaters, flashing lights or a shimmering effect, like looking through a heat haze.

Migraines are an established and common side effect of MPN. However, migraines with aura (formally known as classic migraines) account for only 10% of migraines. So, alas, it looks like we're both doubly unlucky, but at least you are not alone. I would also echo what others have said and recommend you get it checked up through your doctor. In my own case the only things that help are sleep or coffee (recommended by my neurologist and it does work for me).

Best wishes

Stu

[Aime]

Hi Guys, thank you for all your answers. It is a comfort to know the migraines are not unusual with MPNs and I will contact my GP and mention it to the haematologist next time I have an appointment. I will try drinking lots of water and coffee - sounds a good option. I don't suppose a glass of wine would help too? Thanks again for your support. Best Wishes to All, Aime x

[light]

Yes I had visual distortion such as de-pixilated picture and it would last for about several, for 5-10 minutes with headaches and dizziness. It was rather sever experience. This started about six months before I was diagnosed with ET in Nov. 2011. Now occasionally I have same but lesser severity and intensity with headaches, vision and dizzy spells. It usually would be sudden experience.

[Mrs_Average]

Hi Aime,

I too get migraines, including awide variety over different times in my life. Started with classic, unable to tolerate light, feeling nauseous ( only sleep would fix it, although I would get a headache hangover for a week), to visual disturbances, flashing lights, but no headache, and mors recently pressure behind and pain around my eyes. My neurologist suggsted less coffee for me (as I had a high intake) . Painkillers with codeine in them and lots of tea are my cures.

Hope that helps.

[Aime]

Hi guys, thank you for all the answers. I will have a chat with my GP and speak to the haematologist at my next appointment but it is good to know it is a "normal" symptom of MPNs. I will try what has been suggested. I have also got eye drops because my eyes were too dry at last optician appointment (before the emergency one yesterday). Perhaps I am not using them enough either. Best wishes to all, Aime

[lizl]

Hi Aime,

I've also suffered from servere migraine with aura where the visual distrurbance blocks out the whole eye and I can't see and one time had stroke symptoms where I couldn't speak for a week. This was before I was diagnosed. I managed to link it to food allergies - protein in dairy, chocolate (could be the dairy again) and oranges. Once I stopped them they largely disappeared with the odd one, since my red blood levels have been reduced ( I have PV) and on asprin I haven't had one and if I'm hydrated residual headaches have gone.

I can't remember here I read it, may have been Livestrong, MacMillian, Mayo Clinic, but somewhere I read that these conditions can throw up allergies, so it might be worthwhile playing around with foods if you suffer from them.

[Aime]

Thanks lizl, will have have a think about food allergies too. Aime. x

[MichaelS]

Hello Aime, I used to get the jagged line across the eyes from time to time. I think your name for them "seeing through broken glass" is a wonderful description. I thought it was a blood sugar problem and would have a drink of sweetened tea. It would last about 10 to 20 minutes and then go away. It was a bit worrying, and by the time I got to an optician it had gone back to normal and nothing was ever found. I used to get headaches as well, but if I get a migraine these days, the eyes usually go out of focus a couple of hours prior to the ache.

I haven't had the 'broken glass' effect for a long time; I assume since my Hct has beocme controlled. I was diagnosed with PVR in 1983 and now I have MF.

Best wishes and try get the Hct down as quickly as possible with the help of the Haematologist.

[Aime]

Hi MichaelS, thank you for your reply and support. I am due a blood test next week so it will be interesting to see what my hct is. I was wondering about blood sugar too as I have days I get the shakes and become very light -headed (no alcohol involved honest) if I havent eaten for a few hours even though I have plenty body fat to use up!! I have been tested for diabetes and all clear. My hct was just tested 3 weeks ago and was .43 so was okay. Best wishes Aime

[Cassie11]

Hi I have arc of lights migraines with very slight headaches but since my diagnosis with ET recently, they have lessened, and my eyesight has not worsened since last year!

Cassie11

[Aime]

Hi Cassie, that's good to know

Hope your eyesight and migraine symptoms remain stable. Kind regards Aime xx😻😻